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A laypersons guide to DCIS

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  • nottoday
    nottoday Member Posts: 81
    edited July 2014
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    So helpful. Thanks very much!

  • maccupiccu
    maccupiccu Member Posts: 1
    edited August 2014
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    This is awesome and thank you for posting. I was going to post a topic asking others what do they think of labeling DCIS as pre-cancer or to some, no cancer. I don't understand how any doc could say that DCIS isn't cancer. I know it's localized but still, cells are cancer. Why would anyone risk the chance of it turning into invasive?

  • gretchy
    gretchy Member Posts: 11
    edited October 2014
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    Thank you for taking the time to share your hard work. This is helpful.

  • Mommy2Six
    Mommy2Six Member Posts: 12
    edited October 2014
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    Does the pattern of DCIS change the prognosis? If it is solid pattern and completely filling the duct, is that any different in terms of treatment or recurrence rate than the pappilary DCIS?

  • april485
    april485 Member Posts: 1,983
    edited October 2014
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    Mommy2, my understanding is that comedo necrosis is the most concerning aspect of DCIS, not the type. I could be wrong, but this is what I have gleaned from all that I have read (which is considerable) so if your DCIS presented with necrosis, then it is usually more aggressive. It does not always predict recurrence rate though. You really have to wait until after your surgery to find out what everything finally is though. Best to you!

  • proudtospin
    proudtospin Member Posts: 4,671
    edited October 2014
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    I can tell you that my DCIS has comedo necrosis and it scared the crap out of me but I followed my docs advise and am here healthy after 6 years so try not to get to wrapped up on the stuff,

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited October 2014
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    As the others have said, comedo DCIS is the one that is considered the most aggressive, and thereby presents the greatest risk of recurrence or the development of an invasive cancer.  "Solid" DCIS is a non-comedo DCIS, usually is grade 1 or grade 2, and as such is considered less aggressive and presents a lower recurrence risk. 

    What's most important to remember is that whatever type of DCIS one has, it's always Stage 0 and non-invasive.  As long as all the DCIS cells are successfully removed (surgery) or killed off (radiation, hormone therapy), then there can be no recurrence or progression of the cancer.  And if there is no recurrence (and more specifically, a recurrence that has already advanced to become invasive cancer), the survival rate for DCIS is 100%, whatever type of DCIS it is.  Even taking into account those who do have an invasive recurrence, the long term survival rate after a diagnosis of DCIS is 98% - 99%.  That's the prognosis. 

    Here is an explanation of DCIS grades and the types of DCIS from this website:  

    Diagnosis of DCIS

  • BUNKIE10
    BUNKIE10 Member Posts: 670
    edited October 2014
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    It is funny but I still come to this page and read about DCIS. I had it in 2012 and am fine but my mind gets all worried about it and I can not remember what was said here so back I come. Thanks again for such a deep explination on DCIS.

  • hez42
    hez42 Member Posts: 4
    edited October 2014
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    I do the same the same thing! The information is very thorough and factual; Beesie's posts give me comfort when I feel my anxiety levels start to rise...thanks to Beesie and all the others who have shared their experience and knowledge. MUCH appreciated! 

    Smile

  • Dogsneverlie
    Dogsneverlie Member Posts: 164
    edited November 2014
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    I agree, this is such a great post with a lot of factual information, thank you very much!

  • lisagwa
    lisagwa Member Posts: 39
    edited November 2014
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    Agreed. I too come back to read this site and very much appreciate it. Beesie does help alleviate my on and off concerns.

  • Infobabe
    Infobabe Member Posts: 52
    edited November 2014
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  • Mommy2Six
    Mommy2Six Member Posts: 12
    edited November 2014
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    I kept looking for the answer to my question (above) and wanted to share what I learned in case anyone else wondered the same thing. Here is the link to a study that discusses the role of DCIS patterns in staging and prognosis. According to this study, solid pattern DCIS is much more likely to be comedo type, and is much more likely to be intermediate or high nuclear grade. Only 7% of solid DCIS is low grade! That's pretty crazy, and makes me feel pretty grateful. :)

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC330353...

  • leenso52
    leenso52 Member Posts: 19
    edited December 2014
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    Thank you so much for your updated (May 2014) DCIS information.  I believe you have given me the answer I've been looking for, one that I can accept and believe in my gut is correct.  Specifically, what to call DCIS?  My surgeon calls it "Hi risk, precancerous breast tissue changes."  But as an oncology nurse for many years, and even though I had read before this all started happening to me, about the differences of opinion on the nomenclature to describe DCIS, and I could accept this new way of thinking for my patients, I discovered I just wasn't buying it for me!  "Pre invasive, early stage breast cancer really seems to better "fit" my intellectual AND emotional belief system on what DCIS really is!

    My surgery was last Thursday; DCIS, stage 0 (no tumor, not no cancer!) high grade with necrosis, ER+, 2 lumpectomies for a few small areas, one of which came back benign.  (I have not read myself the actual final path report, with any and all addendums from the surgery but did read for my stereotactic Bx in November.)  I return to work tomorrow, have appointments with MO on Friday and RO the following Monday.

    This recovery, especially emotional, is moving forward!  Slower than I want I'm sure.  These Discussion Boards are such a help in so many ways!  Thank you, Beesie!  God bless you and all who have gone before me, and travel side by side with me now.


     

  • angmom41
    angmom41 Member Posts: 4
    edited February 2015
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    Thanks Bessie! This is such a helpful thread. So many questions answered.

  • Ariom
    Ariom Member Posts: 4,027
    edited April 2015
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    Hi Bereaved Daughter, if you go to the top of this page and read the updated DCIS info put there by Beesie, who is a member here and the most knowledgeable person relating to DCIS on these boards, it should answer all your questions.

    When my Surgeon told me I had high grade DCIS, he also told me that he could not guarantee that there would not be an invasive component or microinvasion, till after the final pathology was in. DCIS in itself is always stage 0, is not invasive and is confined to the milk ducts, but it does have the ability, through cellular changes, to break through the duct wall and become invasive. At this point in time, no one can predict which cases of DCIS, will move beyond the ducts.

    I was one of the very fortunate ones, who had an unchanged Pure DCIS Dx in my final Pathology report, after my surgery and SNB.

    I hope you find the info you are seeking.

  • vfay49
    vfay49 Member Posts: 51
    edited April 2015
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    BereavedDaughter, Following my first surgery or lumpectomy, pathology stated that 6.2 cm of noninvasive high grade DCIS had been removed from the duct of my right breast. Although my BS removed a good amount of breast tissue, she did not get clean margins on all sides. She recommended a mastectomy rather than a revision. We were happy she did. I chose to have a BMX; and following my surgery, pathology found an additional 4.5 cm of noninvasive DCIS in the infected breast. That is almost 11 cm of DCIS! My left breast was clear. I did have large breasts (38DDD) but I was still floored. My mammogram a year earlier had not shown the microcalcifications. I too had trouble understanding how these highly aggressive DCIS cells were not considered cancer.

  • Suzannecarol
    Suzannecarol Member Posts: 34
    edited April 2015
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    I am not sure where to post this question but thought since I have DCiS maybe I should post here. I had a lumpectomy March 18. I did not get my pathology report so I asked for it several days ago. Someone told me I needed the information it would have. I have waited anxiously for this report and I got it today. It does not have anything about HER2. I am not sure what I am supposed to be looking for concerning HER2 but someone said I should have that information. Does anyone know if I should have that information after a lumpectomy? I cannot find the post from the woman that was telling me certain things I needed to know. So does anyone know what I should be asking for?

  • specialk
    specialk Member Posts: 9,237
    edited April 2015
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    Suzanne - often Her2 is a send out test since not all labs do the particular testing method. This can be reported on a pathology report addendum as the results often come in later than the other parts of the receptor testing, etc. The other possibility is that Her2 testing was not done - it can be the case for pure DCIS since it doesn't really affect treatment choices.Contact your surgeon's office to find out which is the case.

  • Suzannecarol
    Suzannecarol Member Posts: 34
    edited April 2015
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    Thanks SpecialK. It is so overwhelming to learn all of this.

  • april485
    april485 Member Posts: 1,983
    edited April 2015
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    My surgeon said she does not do the HER2 test for DCIS. I was never given that option.

  • MagicalBean
    MagicalBean Member Posts: 192
    edited April 2015
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    Suzanne, my surgeon did not do HER2 either. He said it was not done when pure DCIS was found.

  • Suzannecarol
    Suzannecarol Member Posts: 34
    edited April 2015
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    Thanks to all of u.

  • MotherofFour
    MotherofFour Member Posts: 1
    edited April 2015
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    This is absolutely awesome information. It really helped my understanding of DCIS- and that says a lot since I have been reading a ton over the past few months on various websites including NIH. Thanks for putting this together and posting this!!!

  • 04gene01
    04gene01 Member Posts: 1
    edited April 2015
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    If DCIS is diagnosed in both breasts at 2 separate times, and a bilateral mastectomy is performed, in general, does it follow that Tamoxifin would not be generally given? If you have bilateral mx, is there any reason to have any further testing as you no longer have breasts?

  • lastar
    lastar Member Posts: 553
    edited April 2015
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    04gene01, my understanding is that tamoxifen would not be necessary after BMX because it's purpose is to protect the unaffected breast. That's what was explained to me for my BMX.

  • cowgirl13
    cowgirl13 Member Posts: 782
    edited June 2015
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    Beesie, I miss your posts. I hope all is well.

    Liz

  • melissadallas
    melissadallas Member Posts: 929
    edited June 2015
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    Amen Cowgirl. Me too

  • Ringelle
    Ringelle Member Posts: 175
    edited July 2015
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    this is amazing! I wish I had found this 2 months ago! Thank you for your time

  • paintbrush
    paintbrush Member Posts: 2
    edited September 2015
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    Thank you for your clarification on the nature of DCIS. Elsewhere on this site it says:

    <<DCIS is NOT invasive cancer. DCIS stays inside the breast milk duct. DCIS can be large or small, but it does NOT spread outside the milk duct into the surrounding normal breast tissue or into the lymph nodes or other organs.>>

    ( http://www.breastcancer.org/research-news/20090410 )

    And this is very confusing, since, for example on DCIS.info they say:

    <<Some DCIS cells can change genetically and become true cancers, and women should not be lulled into thinking that a DCIS diagnosis can be ignored or dismissed.>>

    Although it is understandable that not all is known scientifically, these flat statements are very confusing to the patient/layperson.

    Here, you say that although DCIS cells cannot metastasize, they have the ability to break through the duct walls and become invasive. I gather that means they can move and then change their structure to become metastasic cancer. Either way, it is no help for the non-sicentist/patient to read the flat statement that "DCIS is NOT invasive cancer." It's more important to know that these cells can move and change, and that is why treatment is aggressive.